FOI2026/1985

I am writing to you under the Freedom of Information Act on behalf of Myeloma UK to request the following information:

1.What is the population currently served by the Integrated Care Board (ICB)?

2.Are you aware of how many people have a diagnosis of MGUS (monoclonal gammopathy of undetermined significance) within the ICBs region, and if so, how many?

3.Is there a current protocol/regional guideline for how MGUS patients should be monitored and managed within the ICBs region/remit (outlining the role of primary care, secondary care and laboratory services)?

4.How are MGUS monitoring services currently funded and commissioned within the region? 

5.Please outline the role of primary care, secondary care and the laboratory in relation to MGUS monitoring and management in the region (inclusive of risk stratification guidance). 

6.If possible, please outline all MGUS monitoring models operating within the ICBs geographic remit by hospital trust (including the use of virtual clinics and digital technology). 

7.How much is spent per head of the population on current MGUS monitoring services/models within the ICBs geographic remit? 

1. 2024 mid-year estimate for the Greater Manchester population is 3,009,664 as per the ONS link Health geographies population estimates (Accredited official statistics) – Office for National Statistics)
2. MGUS is a non-cancerous condition and thus diagnoses data is not available via the RCRD or NCRD datasets. NHS GM ICB do not hold the level of detail required to complete this request from a commissioning, contracting and financial perspective. NHS GM recommend contacting all the NHS Trusts within the Greater Manchester footprint, to establish what data is available through their respective and applicable electronic patient record systems (EPRs). To assist with your enquiry, please see below the link to each NHS Trust website with information about how to make a Freedom of Information request.

Bolton NHS Foundation Trust – Freedom of information – Bolton NHS FT (boltonft.nhs.uk)

Northern Care Alliance NHS Foundation Trust – Freedom of Information Requests :: Northern Care Alliance

Manchester University NHS Foundation Trust – Freedom of Information – Manchester University NHS Foundation Trust (mft.nhs.uk)

Stockport NHS Foundation Trust – Freedom of information – Stockport NHS Foundation Trust

Tameside and Glossop Integrated Care NHS Foundation Trust – Freedom of Information Requests :: Tameside and Glossop Integrated Care (tamesideandglossopicft.nhs…

Wrightington, Wigan and Leigh Teaching Hospitals NHS Foundation Trust – WWL Teaching Hospitals NHS Foundation Trust | FOI Disclosure Log

The Christie NHS Foundation Trust – Freedom of information disclosure logs (christie.nhs.uk)

Pennine Care NHS Foundation Trust – Freedom of Information :: Pennine Care NHS Foundation Trust

Greater Manchester Mental Health NHS Foundation Trust – Freedom of Information | Greater Manchester Mental Health NHS FT (gmmh.nhs.uk)

3. As MGUS is not a cancer condition, it is not discussed or recorded at a cancer MDT and its management is not discussed Haem-onc pathway board through the Cancer Alliance. There are no regional guidelines for monitoring / management, it is managed at trust level, and individual providers will need to be contacted. To assist with your enquiry, please refer to question 2 with details on how to contact each NHS Trust to make a Freedom of Information request.
4. MGUS itself and its associated clinical pathway appear to be commissioned as non-specialised services. The service is part of our acute trusts’ Haematology Service, please contact the appropriate NHS Trusts within the Greater Manchester footprint, for more detailed service level information. To assist with your enquiry, please refer to question 2 with details on how to contact each NHS Trust to make a Freedom of Information request.
5. Managed in Primary care via “Myeloma pathway” rather than MGUS. This advises on which blood results/symptoms to refer in – it is offered as a template option for the EMIS problem heading codes below:

>40yrs ‘weight loss’ and ‘night sweats’ and

>16yrs for ‘abnormal weight loss’, ‘unintentional weight loss’, ‘night sweats’ ‘o/e anaemia’, ‘dyspnoea’, ‘spontaneous bruising’, ‘generalised enlarged lymph nodes’, ‘bone pain’, ‘pain in lymph nodes after alcohol consumption’ & ‘pathological fracture’

– Monitored by labs and secondary care providers individually with no regional model. To assist with your enquiry, please refer to question 2 with details on how to contact each NHS Trust to make a Freedom of Information request.

6. Monitoring models are specific to the individual provider. To assist with your enquiry, please refer to question 2 with details on how to contact each NHS Trust about how to make a Freedom of Information request.
7. Further to the answers provided above and as the condition is managed at trust level, across a variety of clinical services, NHS GM ICB do not hold the level of detail required to complete this request from a commissioning, contracting and financial perspective. NHS GM recommend contacting all the NHS Trusts within the Greater Manchester footprint, to establish what data is available through their respective and applicable electronic patient record systems (EPRs). To assist with your enquiry, please refer to question 2 with details on how to contact each NHS Trust about how to make a Freedom of Information request.